After shock diagnosis, Hannah still goes on world tour: ‘Just wants to show it’s possible’

At 5:30 a.m., Hannah got into the van with some other backpackers. She went diving and snorkeling among the coral reefs and tropical fish of the Great Barrier Reef. She was very nervous, she admits. Underwater she can see even less, and if she swims in the wrong direction, she can’t find the boat.

Still, she slung her compressed air bottles on her back, put on her goggles, and left the boat. She took the guiding hand of the dive instructor and admired the winding coral reefs. She didn’t see the fish, they were so small and hidden. After swimming for a while she freed her hand. “I was scared for three minutes and then I enjoyed it. It worked and I was still alive! My fear was gone and it was so cool to be underwater.”

No more driving or cycling

Her plan was to commute between undergraduate and graduate studies. But life turned out a little differently than planned. At age 20, Hannah developed Leper’s disease, a genetic eye disorder. Within three months she suddenly developed a blind spot in the center of her field of vision. Compare with someone standing one meter in front of you. A gray area with flashing lights, then the size of a head, he explains.

This allows you to walk well without a cane or guide dog, but the location is exactly where you can clearly see. So the view around the place is blurry. She can no longer read, can’t see any details, so can’t drive or ride a bicycle. “I could see the whole street, but I didn’t see if the pole was a bus stop or a pole with a colorful house next to it.”

‘Like taking my life’

Within three months, Hannah went from a carefree college student to a visually impaired woman. It took her a while to accept it. “I think it was one of the hardest things I’ve ever done in my life. It took a long time to absorb,” he admits. He suddenly became unable to study and had to stop studying. She lived in the cabins for two years, but returned to live with her parents. “My friends’ lives were gone, mine wasn’t. I felt like normal life had been taken away from me.”

She was given help, able to learn braille and skills like speech software on her phone. But she has been visually impaired for a year and does not want to admit it as a disability. She hoped that the space would shrink before long. “My uncle also has this condition and after a year his vision improved.”

What is leper disease?

Leber disease is a rare genetic disorder that affects the optic nerve. Two eye disorders fall under the collective name Leber: Leber’s optic atrophy (LOA) and Leber’s amaurosis congenita. Hannah has an LOA; Due to an error in the DNA, fibers in the optic nerve die so that vision is not properly transmitted to the brain.

In people with this condition, their vision in the center of the eye deteriorates over weeks or months. Within a year the spot can get bigger, but smaller, although the latter doesn’t happen to most people. This condition usually occurs in men, but can also occur in women. There is no cure.

In Leber’s Amaurosis Congenita, the retina does not work properly and is usually noticed in childhood.

Source: Eye fund

A black year

Hannah met the wrong fate. Her vision did not improve. She has to learn to accept it. She describes the first year after diagnosis as a dark year in her life. “It doesn’t suit me, I thought. Blind and partially blind people can’t live the life I want. A big prejudice, I know, but suddenly I was one of them, and I didn’t want to.”

Hannah is an independent, independent woman and decided to live on her own again six months after her diagnosis. He founded his own studio in The Hague, the city where he grew up. A year later she resumes her studies. “But two weeks later, my mother called me crying. I tried to zoom in on the computer and study like this, but it didn’t work. I said, ‘I can’t do this, mother.’ I said, ‘I have to go to that rehab.’

Rehabilitation in the mid-sixties

Three days a week he went locally to a rehabilitation center in Apeldoorn and received intensive guidance in computer training. Learned braille and useful functions on mobile. After a little getting used to it, the happy student who wanted a treat suddenly learned how to safely cut onions among the over-60s. “I learned important things there, but it wasn’t my favorite place.”

At the rehabilitation center she learned to accept her disability. She met colleagues who were in the same boat. “One of them studied too. We got into the same problem. I can blow off steam with her now and then.”

Take a break

Later that year, Hannah continued her studies for the fourth time. Now with the tools. It went pretty well, but there were still challenges. “Study is a lot of fun, but that bureaucratic arrangement costs me a lot of time and energy. For example, if formulas or tables for a statistics course are presented as images during an exam, they cannot be accessed by my speech software. I can read them digitally in Word or as a PDF. The exam board during the exam. I emailed them to print the tables for me. Very nice, but of no use to me.”

Now that she is studying again and knows how to overcome her disability, she decided to fulfill her long-held dream of travel. “I Googled ‘blind people traveling alone’. I saw a video of a blind and deaf person. That gave me enough confidence. I didn’t want to wait any longer.”


She arranged a ticket to Australia and left. “I prepared that it would be hard to make friends. If someone waved or smiled at me, I didn’t see it. I didn’t recognize new people, so I couldn’t say, ‘Hey, I didn’t see you? Were you on the Internet yesterday? The beach?’ If it’s really that bad, I thought, I’ll lie on the beach for two months and listen to audiobooks.”

But it doesn’t sting, it’s wonderful. “That’s because Australians are the most relaxed and helpful people I’ve ever met. Whenever I’m wandering around a shopping center looking for a supermarket using Google Maps, someone will come and show the bus driver the way to the supermarket door.”

Hannah is currently in New Zealand with her boyfriend Morton. After traveling alone through Australia for two months, he joined. They have just returned from three days of hiking through a national park. “It’s a good thing my friend was there,” she laughs. “It’s easy to notice a mark on the trail and difficult to judge depth.”

“We did a hike where we had to climb seven hundred meters. The trail had those wooden steps that were really hard for me to see. My friend kept saying ‘stairs,’ and then I knew I had to climb the pay. Attention.”

“Everything is still open.”

After her diagnosis, she didn’t think she would be traveling the world with her vision impairment, but now she has lots of plans. Next destination is India. There he visits his parents and sister for two weeks. after that? “Everything is still open. I want to go to Nepal, Japan, Vietnam or Cambodia.”

I don’t know when she will come home. “I love to travel,” he says. “Not just for me, but to show the rest of the world that people with disabilities are doing really cool things.”

Sunday interview

Every Sunday we publish an interview in text and photos with someone who has done or experienced something special. It may be a major event that he or she handles admirably. Sunday interviews usually have a great impact on the life of the interviewee.

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